and the Devil himself...

Thursday, November 22, 2012

Confessions: My Parents Both Have Cerebral Palsy and They Are What I Am Most Thankful For

Empty Chair, Set for One

by Page Canfield Beattie

The Remearkable Page Canfield Beattie

Cerebral Palsy is not something my parents were born with. It was not genetic. It occurred as the result of brain damage after or during their birth. To my understanding, in the case of my father, he was a breach birth born at home in the country, my grandmother said with a doctor she believed was drunk. The cord was wrapped around his neck, the oxygen cut from his brain for long enough to damage his ability to walk for the rest of his life, (though he could, he was not confined to a wheelchair) and impaired one of his arms to the point of non-mobility. His brain, however, was not affected at all.

He was a brilliant, remarkable man who received a degree in advertising at a time when people with physical disabilities usually did not complete 'normal' school let alone attend college. He became one of Richmond's top employment recruiters, which included work with placement in Virginia's Department of Rehabilitation. When I was a child, attending one of the top private schools in the city, a constant hi-light of school days was watching my father on television because he was extremely active in lobbying for rights of the disabled in Virginia at a time when laws were nothing at all like they are now.

He did not see himself as incapable because of his handicaps. He instead became a driving force in his community and really did quite a bit to shape the perceptions we now have of the disabled as opposed to the way they were when he, and even I was a child. And as a child, I sadly have pretty constant memories of both he and my mother being publicly made fun of by both children and adults. They fought it instead of letting it get to them.

My mother developed cerebral palsy as an infant. She had pneumonia soon after birth and her fever escalated to such a dangerous level that it caused brain damage. Penicillin was not in common use at the time but, ironically, became so just a few months after her health crisis. Her hands were permanently and pretty severely damaged. She went on to obtain not just a BFA from the top art school in the country but also was only 1 class short of an MFA, (statistics, which she could not complete due to the brain damage). She, along with my father, fiercely lobbied for the rights of the disabled.

They raised two, if I do say so myself beautiful and brilliant children at a time not far from one when the disabled were sterilized. They taught us, above all, that nothing is impossible. They taught us that the establishment and common opinion are not always right and are, in fact, egregiously wrong. Not necessarily because of ideologies, though that does occur, but because they are often seriously destroying not only lives but, worse still, potential. They beat every odd imaginable. They did that with very little support from the world at large. They reached out and grabbed the support by the throat and claimed it with their own example.

I was asked once in an interview why I was so enamored of Outlaw Country rather than the Broadway I was raised to perform or at the very least Jazz or something more reflective of my background, (only visible by those who know my background). My very correct answer was that my parents embodied all of the best qualities of the genre.

This, the last part of their lives, is not good. It is, in fact, the most hellish, nightmarish set of situations I've ever witnessed. They are unable to physically control anything going on around them. Their situations are of relative alarm as far as that goes, but anyone completely and in every way dependent; in my fathers case and nearly my mothers ones of immobility, thereby ones of lack of ways to develop normal social groups, to even make phone calls or go online, to drive... all of the things we do routinely to participate in the world around us, are gone. My father's death and the year leading up to it was truly horrifying. Mother is alive and brilliant but her situation is also, in many ways truly horrifying. I choose the word because what it most effects is their minds. Not because they are crazy, quite the opposite, they are the sanest people I have ever known, but because they are completely, totally isolated and dependent on a very few caregivers and a handful of immediate family.

No man is an island. Mom, truly one of the greatest artistic and intellectual minds of her time and my own, all you see, respond to and enjoy following and interacting with me socially comes from her to the 70th percentile, is suffering largely because she cannot communicate effectively enough to develop a peer group. The same happened to my father and I watched it, moment by moment, in two rooms with him for a year. I tried all that I could but no one can singlehandedly cure, or cure at all, that vast of a problem. He died at 63 and, under the right circumstances, that would have been avoidable.

She is a genius. That has to suck beyond our own imaginations.

Add her on Facebook and share your world with her, (Page Canfield), especially if you are an artist or intellectual. And if you know anyone else lonely, make an effort to help change that. It's a greater source of poverty than most of us, luckily, can ever imagine.